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I had the nuchal scan done and the bloods on the NHS, not that the result would have made an difference to us like Mrs Smiff says but it would have been good to know if something was wrong. Like the other girls say it would be worth asking. x

our hospital doesnt offer it nhs.
i think i would like to know but like you mrs smiff it would be a hrd decision to abort after going through all the treatment, seeing the babies heartbeat at 7 weeks - to me it was a living little one and i dont think i could get rid of it.

its a bit pants that its a postcode freebee!

but its friday and i'm just glad its the weekend and i can have a lie in tomorrow.....

RE: Nuchal Fold of 3mm - Any Advice?

Hi Andrea. I'm new to this site and found your message through google.

I am also 24 years old and in my 33rd week of my second pregnancy. When I went for my 12 week scan with my parnter it never entered my head that anything could upset me!

I was told after they measured my baby's nuchal that it was 3mm (the cut of point) this meant my risk of having a downsyndrome baby went from 1 in 1000(because of my young age) to a horrible 1 in 69! I was terrified especially when they said I need to be sent for a speacialist CVS scanning, where they injected a big needle into the placenta and scrapped some out to be sent for testing.

CVS does carry a high miscarriage rate but it rules out downsyndrome so I had to go through with it. My test results came back in a couple of days (but I had to chase the hospital for them as I was so anxious) they tested negative for downsyndrome which I was over the moon about.
But they said that was the first set of testing, the second set took longer and the results should of been with me in 2 weeks. I never got the second results ever! These results were supposed to rule out any gene abnormalities as they test every cromozone, so as you can imagine I am still very nervous and anxious about my babies health and wellbeing.

I have had anomoly scans which seem to be fine but it just doesn't put my mind at ease.
Sorry to blab on but if they offer you a CVS please make sure they do the full testing as it will make your pregnancy hell not knowing for sure.

And if there is anyone on this site that knows of any other reason why my babies nuchal was 3mm other than downsyndrome please email me... I can not understand why a healthy baby would have a inflammed nuchal????? Can anyone put my mind at ease?

HI Im sorry you have had a time of it and I hope someone can help you out.Maybe one of the Fzer who have been in a similar place.
Have you read this thread from the start??
Can you not phone to chase the other 2nd results??

I will just dissapear and do a search see if I can find anymore info.
I Wont be long

Ok this is what I found,
If the NT is increased, it does not mean there is definitely a problem. Some normal babies have increased fluid. Nine out of 10 babies with a measurement between 2.5mm and 3.5mm will be completely normal.
If it were me I would phone chase the 2nd results via Midwife, Gp, Hospital, consultant and and who ever gets back first ask them the same question you have asked here.

Sorry you have had such a worrying time. As 1x said, are you able to chase the results of the 2nd test? Have you asked your community midwife? I think that sometimes, if tests are done, results may be sent back to your community midwife.

Or, where did you have the test done? if you contacted the department/hospital where you had the tests, they should be able to help, or point you in the right direction.

Are you under consultant care for your pregnancy? If, so, they should have had a copy of the results. Often the consultant's secretary is a good person to contact, when trying to speak to a consultant. You can usually get hold of them by ringing your hospital, and asking to be put through to the relevant conusltant's secretary.

Have you discussed your worries with your midwife, about the nuchal result? She/he may be able to discuss this with you, in more detail, and answer some of your questions.

The NHS will be offering nuchal to everyone as it is a NICE (National institute for health and clinical excellence) guideline that it should be offered to all women combined with blood tests as this is more accurate than just scan or just bloods. The problem is that although it should be offered now not all trusts have enough staff/equiptment to offer the service, my trust will not be doing it till next year, not fair that some people have to pay £200 to find out and others get it free. Bear in mind that it is not a diagnostic test but a screening test therfore it is not 100 per cent accurate, and can give false positive results (leading to stress and maybe unnessesary further teasts) I cant decide what to do, know i would never abort my baby but it would be good to be prepared for the news.

This post has been edited 1 times, last edit by "zacfizzgrizz" (Oct 6th 2008, 10:48pm)

This is something only you and your DH can decide on. I was offered one as routine and, whilst I could have refused, chose to have it. My thinking was that I would rather know than not know.

The things to consider before having the test are that it doesn't give you a definite answer, what you would do if the result comes back as high risk and what your feelings are about having an amnio or cvs if one was suggested/recommended. As you've said, you also need to consider what your feelings are towards termination.

There's some really good info on www.arc-uk.org (not an FZ endorsed link) which might help you decide further. You could also discuss it with your midwife?

I'm 38 and although our feelings towards termination are similsr to yours, it is a very personal decision. We decided to go ahead and have nuchal scan with the blood tests and all came back reassuringly ok. It isn't a definitive test though and like previously said you then have to decide if you want to go down amnio or cvs test route.

Yes, as has already been said, ultimately this is a personal decision for you and your dh, and it is a hard decision to make, with lots of factors/feelings/thoughts to consider.

In my health authority, this isn't offered as standard during the pg, so me and dh discussed if we would have one privately. In the end, because I knew that whatever the result, it wouldn't alter things, in that I would continue with the pg, we decided against it, but that was just what was right for us, and it will be different for each couple.

I'm having the test on Tuesday. We're going privately. I think I'm doing it just to make me more prepared if there is a possiblity of something being wrong. When it comes to it, I really don't think I would ever consider ending my pg by choice.

I had mine as a matter of course in my antenatal checkups. I had decided before hand that regardless of the result I would not be going for amnio as I would not abort. What you have to consider is: would you be able to manage raising a special needs baby? I thought at the time that, yes, I would - it was my baby and there was no way I would not want to keep it.
In retrospect - with a normal and healthy child - I do not know if I would have coped with a child with special needs and I am not sure what I would do if I were ever to achieve a second pregnancy...

Quoted

Originally posted by Rene
I had mine as a matter of course in my antenatal checkups. I had decided before hand that regardless of the result I would not be going for amnio as I would not abort. What you have to consider is: would you be able to manage raising a special needs baby? I thought at the time that, yes, I would - it was my baby and there was no way I would not want to keep it.

Ditto, and I therefore decided that I wasn't going to have any of the tests. I also wasn't happy to accept the risk of miscarriage associated with amnio or CVS so I wouldn't be having it done so what was the point of the tests? However its a very personal thing and I sometimes think my way is more to do with burying my head in the sand than any ability to make a decision.

However, to address Renes other point about coping with a disabled child, I can't put into words the overwhelming love I felt when DD was born and having been there, I am absolutely certain that I will feel the same about this child regardless of what the rest of the world might see as imperfections.

I am only a week behind you and I have to make this desion too I was talkign to DH the other night and he says yip we should get it so thats my descion made but it is awful hard all my friends have had it but I think we you go through what we have went through it changes everything I have my 12wek scan on Wed so looking forward to that and just concentrating on that at the mo.

I wasn't sure at first if I'd have the Nuchal scan or not. Its not offered routinely here so I had to pay for it. I knew I wouldn't be able to terminate even if my baby had Downs, but in the end I decided that forewarned is forearmed and that if under the circumstances there was a high risk of my baby having a chromosomal abnormality then it would give us plenty of time to prepare ourselves and learn how to cope with it.

The Nuchal test doesn't tell you whether your baby does or doesn't have Downs or wnother chromosomal abnormality, what it does is gives yo a risk factor based on several markers. Only an amniocentesis can tell you yay or nay but thats the next step should you have a high risk factor

Happily, most pregnancies are normal so there's every chance that your results will come back and give you a sense of peace and well being. In my view, that was priceless.

After careful consideration we have decided not to have it. We will leave it up to nature and take what life throws at us.

I know for a fact that I will love my child regardless (I already do) so in that respect I don't think that there's a need for it. Like they say if the result is 1 in 250 then thats 249 chances that it won't be born with Downs Syndrome.

To scan or not to scan?

I`ve been thinking about having a nuchal scan but not sure what to do.
Time is running out for me now anyway, maybe thats the problem and I can`t think of anything else.

Anyone else find it hard to make a decision?

On the one hand, I think it would be good to know, good or bad.
I`m thinking of the worst anyway, so not sure if this would reassure me if the results were good and I`d be more prepared if not?

Dp is sick of me talking about it I think, he says not to bother and I think most people close to me would too, but its hard not to think the worst isn`t it when you`ve gone through so much to get this far and am used to disappointment, or is it just me?

I think these scans are pretty accurate aren`t they, much more than blood alone anyway.

I wanted to say I never got offered a nuchal scan and I refused the bloods for downs and spinabifida as I dont want results to come back high risk and worry more if there is no reason as I know the bloods can be wrong.

This was just my feeling on matter and whatever you decide will be the right decision for you.

Hi Kazzy, I was like you, I had the scan as I thought more info would help me keep calm and stop thnking/waiting for the worst to happen (as I was the same). But for me the scan did the exact opposite, I got obsessed and really worried afterwards. You can only ever get a estimate of the odds and it throws up lots of false positives/high risk results when babies are normal. The scan made me more worried! I came back with a 1:276 odds (I know! Like 275 babies will be normal, thats less than 1% risk) but a firend the same age came back with 1:2,900 so mine then felt high. I had several close friends who came back with high odds, like 1:12 and all had amnio and their babi3es were perfectly normal, but by then they had been through so much stress and potentially risked invasive tests that could have put their healthy baby at risk. I would not scan again.

I did the scan to get more info but afterwards we decided to stop testing and not do the follow-up bloods and leave it alone.

The bigger/real question you need to ask (and what decided it for us and made us stop) was that what we actually needed to ask was would it make a difference if the odds came back really high. Would we have an amnio? Which would be worse the risk and could we least live with - the risk of having a child with Downs or the risk of loosing a healthy baby at an amnio etc. In the end we decided it didn't matter if he had downs etc or not as by that point, 13 weeks he was already our son. If you would risk an amnio if the odds came back higher and would terminate if the tests ended up positive then DEFINITELY have the scan, but if you wouldn't and your a worrier like me then I think they will just cause you alot more stress and fixation on this.

Sorry for the essay! These scans creep up on you and they are such huge questions to consider. Best of luck whatever way you decide.

Personally I am having the nuchal fold scan & blood test. It's not offered on the NHS here but I am booking a private one. I will also have the triple blood test and I believe the nuchal fold scan & combined blood test to be more accurate than the triple blood test. I have seen many friends come back with a very high risk triple blood test ratio for Downs and by then, of course, it is too late to have the nuchal scan. They have then gone on to have an amnio for it all to be fine.

So, that's part of my reasoning I guess - I don't want to be in a position where i wish I had had the nuchal scan when it is too late.

As Deidre said - the question really comes down to what you will do with the information once you have it. Only you know if you're the sort of person who will fret more with the info than without it. Also, if it comes back as high would you go for an amnio?
Again, personally, I would have an amnio if my risk is very high and I would seriously consider a termination if that was positive.

Hi girls,
Thanks for your replies.
Well after much `umming' and `arring' I finally booked a nuchal scan.
I had to pay £180 to go private, which i think a lot of people have to do.

i just thought if it was good odds it would put my mind to rest and if not, we could prepare ourselves and decide what to do next, if anything.

Well, I had my scan last night and the results were 1 in 562!!!
Which i think is pretty good, compare to the 1in 189 average for my age.
We won`t get the blood results til Friday but the doctor didn`t seem to think they would effect things too much.

nuchal thickness scan

hello everyone,

i had my first 7 week scan yesterday and all is looking well, perfect seen and heard too...
its a huge sense of relief...

im now thinking about having a nuchal thickness scan in few weeks for screening of down's and some other syndromes...im unsure , cos if i get a high risk, im not sure whether i would risk going through amniocentesis..

Hi Mirror,
I would only have the nucchal scan if you would consider acting on the information. If there is no way you would risk having an amnio or consider a termination based on the results of the amnio, I would not have the scan. It would just lead to unnecessary worry.

But if you think you would have an amnio, then you should definitely consider having the nucchal scan.

As Mavis says its really down to individual choice - there is no right or wrong decision.
I am having the nuchal scan for peace of mind and as its much more accurate than the blood tests they do at 16 weeks

im in a similar boat at the moment,having TTC for almost 3 years, have had my first BFP, after 1st IVF...7 weeks into my pregnancy and first scan yesterday showed that all was going fine, which was so reassuring

i am now faced with the same question, to scan or not to scan..i do have some time to decide and DH and I cant decide...for similar arguments...

reading all these views has really helped..
Im 29,DH 32.

i know few friends have been teeling me to definitely have it, just to be reassured, but it may turn out to be otherwise, and i dont think im going to have amnio...so lets see

Hi Mirror - congratulations on the scan I've been looking out for news.

I had a combined test at Leeds Screening Centre - they measure the nuchal fold and do a blood test - mainly because the hospital suggested it cos of my age (so ancient!)

Not sure I'd do it again - the first results were quite high risk so we had the second test the centre offer and they came back much lower. It was quite a worrying time and I really couldn't decide whether or not I'd go ahead with an amnio.

However, if you decide to go for it, I would recommend that centre, they are really nice - not cheap though

just a quick question mirror (and apologies if it is a silly one) - is it just the nuchal fold scan you are deciding about, or would it be the triple blood test as well? What I mean is, would you decide not to have hte nuchal fold test but decide to have the triple blood test?

hi jensqui, its not a silly question at all, cos all i am aware about is just the scan for now !! i havent been told about the blood test at this stage
..as far as i know, if there is anything unusual they find in the scan or if the risk turns out to be high, they then proceed to the blood tests and to amnio..so i assume that the blood tests come later, or is it the other way around?

They've been using the triple blood test for years as a screening (note screening, not diagnostic) test for Down's and Spina Bifida. The blood test is usually performed at around 16 weeks. The nuchal fold scan is a relative newcomer as a screening test for Down's. The nuchal fold test (& combined blood test, different to the triple blood test) is thought to be more accurate than the triple blood test. (as an aside, the 20 week anomaly scan can pick up Spina Bifida problems)

I guess I was just asking because, for me, the decision to have the nuchal fold scan was related to whether or not I would have the triple blood test. By the time you have the latter it is too late to ahve the nuchal fold scan.

Just wanted to say that my friend had the nuchal scan and was assessed as low risk then the NHS (against her wishes) performed the blood test at 16 weeks which came back high risk (she thinks its cause her dates were not accurate).

Anyway they said she didnt need an amnio as the nuchal scan is much more accurate than the bloods - they just dont do it routinely on NHS everywhere due to cost.

Janey has hit the nail on the head! As I posted in the other thread, I have had the nuchal fold scan because I believe it to be more accurate than the triple blood test. I won't now have the triple blood test.

But, the decision to have either still comes down to the same points really. I guess the point I was trying to make is that if you aren't going to have the nuchal fold scan, which is more accurate, then personally I wouldn't have the triple blood test. If you are going to have the triple blood test, then I would have the nuchal fold scan.

Downs Testing

Hiya to all that read this

I went for my first midwife appt last night and the topic of conversation is the downs testing, i don't mind having the scan done to do the measurements, but the proplem I have is my age, as I'm 40 they will class me at a high risk, even without knowing if that was just a age thing or whether anything wrong with baby, I'm not prepared to go through with the other test as the risks of miscarrige. So my thought are what is the point of having the scan other than the dating side of it, as I know i will be high risk without going.

Just wondering if anyone of my age or there abouts has had this problem, also I'm prepared to wait for the 20 weeks scan where they can tell whether there is any problems with baby, re organs or growth, that should give me a clearer picture of what is ahead of me.

RE: Downs Testing

when they give you a risk value, they will, of course, take your age, into it, i.e. will apply the measurements / blood results to the base risk for your age.

However, doesn't mean that you will definitely come out as high risk after the scan - e.g. your base risk could be 1:150 because of your age (I made that figure up as don;t know what it is) but after taking the measurements and blood results into account, your risk could be 1:2000 afterwards.

From memory dizzyduck is about your age and I am pretty sure that she didn;t come out as high risk after the scan.

I delcined the 16 week downs bloods, They dont offer nuchal fold scans here and with bloods alone I didnt feel they would paint an accurate picture anyways. I DEF wouldnt have had an amnio and seen no point worrying myself silly about something I could do nothing about anyways.
But everyone feels different about it that was just my opinion, Good luck whatever you decide to do

I was only offered the triple blood test with my first pregnancy and I was 37 at that time. Based on my age alone, from memory, my risk factor was about 1 in 80. When I had the triple test it went down to, I think it was 1 in 22,000 although that sounds a little improbable so it might have been 1 in 2000! Whatever it was, it was very low, so it meant I didn't go on to have the invasive tests.

I suppose if you would not risk the CVS or amnio tests then it seems a bit pointless to have the scans and be worried all pregnancy by a high risk factor. I have a friend who had exactly this experience - she had the triple blood tests and was given a risk factor of 1 in 20, declined an amnio and had a stressful last trimester. When her little boy was born he was absolutely fine.

I've just had the nuchal scan on my twins and am waiting for the combined results of the NT and my blood tests. We aren't sure what we'd do if we got a high risk factor for one or both of the twins (I'm 40 now) so we're taking it one step at a time.

Hi
I'm a couple of years older than you and knew I'd come out high due to age alone so asked them to break the results down for me. The age related alone was something like 1 in 30 or even worse, but the nuchal was really good and the bloods were OK (one fine and one slightly but not a lot out of range). My overall risk was then 1:250 which is brilliant for my age. I decided against amnio given past m/cs and had detailed scans at 16 and 20 weeks for soft markers. None were found and everything looked normal. I know this is no guarantee, but there are no guarantees for anyone whatever their risk factor or age - someone will always be that 1. I would ask them to explain the results to you like they did mine - I found it very reassuring to see the breakdown.
Good luck! PM me if you have any more qs.
xx